{Baby Moon}

IMG_7817{grateful} Believe it or not, I think she came into my life to help me move forward. I went to get here but I was called to get her — does that make sense? It does to me. I had plans of getting a protection dog here (service dog isn’t a thing in India yet) because I needed some peace of mind that I’ll be okay. The move from Singapore to India has been hard on me but that’s also not surprising. And then one day, I’m looking for kittens online with the name ‘Luna’ at the back of my mind.

The next day I find Luna, the day after I go and pick her up. She made me get out of the house and out of my mind. I went by car to get her (I can’t stand car rides) and I took her to the vet on my own when she was ill. It was my very first time stepping out on my own in India. First time ever. I’ve always been accompanied by someone or the other all my life (whenever in India) and here I was, with a kitten in my bag, travelling deep into a highly-overwhelming city looking for a vet I’ve never met before.

Nursing her back to health (doc said she was so weak we could’ve lost her) sort of took away the extra noise in my mind. The worry. The uncertainty. The fear around having moved to a new place. It didn’t vanish completely (I doubt it will for a while) but it faded away into the background. It made me pause and focus on what was important: my health and Luna’s recovery. I was just about starting to walk after being bedridden for 6 weeks so looking after myself while looking after her was rather difficult. But I knew it had to be done. We were meant to meet. Sometimes our intuition guides us in ways we don’t fully understand. It was subtle but clear for me that Luna and I were going to meet. I love her like my own child. And, looking after her has validated it for me that I do not want kids of my own. Of course, I do have a list of reasons why and deep down, I feel like that’s my truth. We’ll see how things go. Grateful to have met Luna. Waking up next to this face warms my heart 😍

“distract yourself or find a hobby”

Most people think that people like me who spend a lot of time at home are in need of hobbies or distractions of some sort. You know, something that can take our focus off our pain and suffering.

After ten years of dealing with Ehlers-danlos Syndrome Hypermobility Type, I can tell you this — while you can’t get your focus off pain entirely even for a fraction of a second, you can learn to acknowledge its existence, know that it’s going to be there with you and  still find ways to work with and around it. 

People like me who have had to leave a full-time job and figure out new ways to become financially independent (whether fully or partially), will once every while come across someone who tells us to distract ourselves from our experience or find hobbies since we have nothing else to do (according to some).  The thing is, not all of us are looking for distractions or hobbies.

Whatever you see me doing outside of my health routine are things I WANT to do for  reasons you may not always know. There is usually a detailed thought-process behind things I choose to do or not do.

I am currently completing a life coaching certification not because I am desperately in need of a hobby but because it’s been a personal and professional goal for me. It is something that calls for my strengths and aligns with my purpose. I want to be able to extend support while trying to support myself. I’ve always wanted to do it with the intention of setting up a business, one which doesn’t jeopardize my progress and allows me to work from home or bed for that matter. It might take time but that’s okay with me. I’m not doing it because I have nothing better to do. I’m doing it because I WANT to do it.

I taught classes throughout last year because working with people, helping them channel their creative energy, creating a space where people from all walks of life come together and open up is what I wanted to do. It was catching up big time and just then we decided to move countries. For me, conducting group classes centred in creativity and healing was a step in the right direction. Something that now makes me feel prepared to be a coach.  I didn’t do it because I needed a distraction. I did it because it felt right. And just like most people my age, I wanted to be able to at least partially pay for myself. 

I write (and share) because I believe writing is healing. I write with the hope of building a connection and community. Again, not because I need distraction. 

I cook because I’ve always been passionate about cooking for myself and people. It’s basically a way for me to express my creativity, apart from other art forms. Considering that I’ve had to leave dance and my career in design behind, cooking and making food look good keeps my creative energy running. I’ve had to train myself in the kitchen from scratch after not being able to prepare a cup of tea for myself at one point. I don’t cook for distraction. 

I volunteered with kids from troubled childhood because, given my personal experience, I’ve always had a soft spot for kids and believe so much in ensuring that children receive love,  the right kind of support and opportunities for growth. I didn’t do it because I needed to pass my time. 

It’s so easy for people to assume that if we’re at home, we’re bored or lonely or missing out. Sure, not all days are great but that’s the case for anyone else too. Personally, though, I’m not bored or lonely, and I rarely experience the fear of missing out (fomo). Yes, there are limitations and sometimes it sucks but on most days, I’m happy, grateful and at peace with where I’m at. More so because I know where I’ve come from. Honestly, I’ve probably never been better and I say this despite having lived pain-free at one point. I love being at home, prioritising my health, stepping out when I feel like it, going to places that feel right, hanging out with people I love, doing things that make me happy and finding joy in little things. I, for one, don’t need any form of distraction. 

Distraction is yet to prove itself to me. It has never worked. In fact, when I tried to distract myself from reality, things got worse. What you resist, persists. When I pushed myself, tried to act “normal”, I suffered more – mentally and physically. My health deteriorated at a very rapid pace. It took a lot of self-hate, pushing beyond my limit and attempting to distract myself from reality for me to finally press PAUSE, look at my priories and figure out a new way of living. Coming face to face with my reality, every raw bit of it, is what got me where I am today. 

Point being, don’t suggest distraction as a coping mechanism unless we clearly say that’s what we’re looking for. 

Trust us when we say we’re trying our best to create a different life. Who said different = bad anyway?

Support us because you believe in what we’re doing rather than from a space of sympathy or pity. Show us that you see past our illness. Tell us that you think we’re capable of embracing the illness AND following our dreams at the same time. Ask us if we need help in getting there. 

Love,

M

{blood and years don’t matter}

I’m experiencing deep emotional pain right now. I’m going to acknowledge that, let it be until it leaves, and also keep in mind that I’ve done my very best.

Self-awareness doesn’t mean that you’ll never make mistakes. It means that even if you did, you will pick up on it and respond in a way that best aligns with your highest self.

It also means that you walk away from things and people that take away from you.

Trust me when I say this — it doesn’t matter how long you know someone or if you share a blood relationship with that person.

What matters is how much you and them evolve as people, how you communicate and whether you’re truly there for them.

This year has taught me that no matter how much healing work of acceptance and forgiveness you do, some dynamics never change. You do the work for yourself; so that you can create a life and relationships that are supportive.

It doesn’t excuse their behaviour and all the nasty things they may have done to you, but it frees you from the suffering of it. It frees up time and energy for better things in life.

In the last two days, I’ve reached a completion with two relationships in my life. I am very peacefully convinced that I have tried my best and that I no longer need to keep anchoring the relationships.

I am not longer available for it.

I am letting go, with love, what I thought I shared with them.

❤️

{deep waters}

People can only meet you as deeply as they can meet themselves. If one can’t handle the complexities of your being + experience, they probably can’t handle the complexities of their own.

I’ve learnt to let go of, with love, things and people that no longer serve me.

At first I used to think that my health, apart from taking away things that I loved, took away people I loved. Today, after a decade of dealing with the ups and downs of my health, I’ve realised one important thing: my health is a beautiful filter for all relationships in my life. My relationship with people as well as things. When it takes away, it keeps aside the best of the best.

I’ve lost people I thought I couldn’t live without and also gained people I least expected would show me so much love and understanding. The support and guidance that has shown up in my life in the last four years has been immensely helpful for me to make peace with where I’m at.

I don’t mean to say for a moment that those who are no longer in my life are bad people. But, they were incapable or unwilling to swim in the deep. They preferred the shallow waters. Not everyone’s realities are the same and some of us are more aware of this + willing and capable of accepting it when it comes to people we care about.

My health has also taught me another thing: the importance of healthy boundaries. Drawing boundaries with people is not the same as building walls between you and them. You get to decide who gets to visit the garden you’re growing, how long they stay and what they take with them.

If someone had told me these things years ago, I think I might just have suffered a little less. I would like to think I had to learn these lessons through personal experiences. Looking back, no matter how painful it was to let go of things, people and the idea of a certain kind of life, I would say it has been an eye-opening experience which has now aligned me with a life more supportive of who I am and my reality.

I’ve always believed in quality over quantity in most areas of my life. Today, the people I am surrounded with are those who listen, try to understand and also do their own research when it comes to having a loved one with a life-altering illness. They also trust my experience when I speak about it and we’ve learned to have a more open and honest communication.

Grateful to be back home after spending a day at the hospital. I had a random and severe episode of syncope two afternoon’s back but thankfully nothing life-threatening showed up. The cause remains unclear but from our understanding, it could’ve been anything from dehydration to my gastro symptoms to extreme fatigue.

Thank you to the kind souls who reached out. I feel so loved and care for. A much bigger thank you to those who’ve stood by me through the thick and thin.

❤️

-M

Spending the next few days and possibly even the rest of the week in bed. I tried to push through last week, hoping the tightness and spasms in my lower back and sacrum subsided but unfortunately, there has been no progress. Strengthening is on hold for the time being and we’re trying IFT + manual work on my lower back during physiotherapy.

About six days ago, i fell right on my bum while taking a photo of a friend and since then, my already triggered lower back pain got much worse. Having a sublaxed tailbone and two slipped discs makes pain unbearable sometimes. Add injury or impact of any sort and that takes it to another level. My reaction was to get more physiotherapy done, tend to it using all my pain management techniques and increase my dose of analgesics and anti-inflammatories.

Yesterday, however, just as I was trying to get out of bed, I realised I couldn’t possibly let this continue. I had to finally pause and listen to my body. I need to provide it with a conducive environment to heal and recover. I now need to allow it time and give myself permission to rest without guilt. Starting today, I’m going to do just that. I’ll work on my coaching coursework and do what is possible from my bed, pacing and resting when necessary. It’s time to give it time.

A small something

I was diagnosed with EDS type 3 in 2012, and have since been learning to live with theeillness. Before my diagnosis, I spent a good four years searching for a reason behind my deteriorating health and found no answer. Imagine being 18, three months into the course you loved, and suddenly starting to fall ill day by day. I tried everything that was “supposed” to help only to find out that it’s not a one size fits all kind of a situation. No one knew what was wrong with me and some refused to believe that someone in their late teens and early twenties could possibly be in so much pain. The struggle was real and it was beginning to affect my lifestyle. At one point, I thought I was living someone else’s life. It was devastating and unexplainably miserable. All it took was one medical professional to sit with me and really listen to my complaints and put together all my symptoms since young, which really didn’t seem out of place at that point.

After years or greiving over my old life and resisting what was coming, I finally started to work on acceptance and letting go. I could no longer run away from the fact that this was a chronic illness and the only way to move forward was to make peace with it as though it’s part of who I was, because it is. Sure, It doesn’t define who I am, but it plays a major role in every little or big decision in make in my life. It affects my energy levels, makes me put emphasis on bigger and greater things in life and hence also changes how I choose to live my life.

Things were only getting from bad to worse. The longer I held on, the more I struggled. The more everyone around me struggled, too. When I could no longer push, when my body started to scream and not just whisper, I figured it was time I made major lifestyle (my passion/activities I enjoy, the people I spent time with, my daily routine etc) and career change in order to accommodate and honour my health. And so I did.

I no longer see a point in creating suffering for myself by trying to push my body beyond its limit. It’s hard but I’ve realized that you have to make a choice every morning, to get up and do the best of your ability. Whatever your best is, is good enough. I’ve also realised the importance of staying true to your personal experience no matter what anyone says and also finding people who trust you.

Over the last few years, I’ve been working on adopting a new perspective towards my health and the choices I need to make. Firstly, I tell myself that these choices and decisions are FOR my health, not BECAUSE. Secondly, I choose to believe that I am fighting my illness by loving my body. Thirdly, I take conscious steps towards forgiving and letting go of what I thought my life “should” have been and adopt an attitude of gratitude as far as possible.

I won’t lie – living with chronic illness is tough. It complicates your life and makes you feel as if there is nothing more to life but being sick. It makes you feel like you have to climb this never-ending mountain all yourself and that no matter what you do, it’s not enough to change anything or make a real difference. It makes you think about the meaning of pain and suffering. Question your abilities and sense of self. I know the extra suffering that comes along with the physical pain.

Then again, every day is a new day and all we can do is acknowledge our pain and learn to work with it. It might require you to reassess your path every now and then and do what is in alignment with your health. That choice to work with your body while taking one little step forward towards what you love, or what frees you and makes you feel at peace is what reflects your strength and courage. It’s not your illness that defines you, it’s how your choose to live with it that does.

You have the choice to do something every day that makes you experience a small victory. And many victories put together allows you to overcome the burden of living with a life-altering illness.

Keep in mind that this ‘something’ I’m referring to doesn’t have to an incredibly big task or fit the expectation of the society in any way. It could be something as basic as getting out of the bed, holding a brush and writing a letter, doing an extra shift of your part-time job, washing your own hair, maybe cooking yourself a meal, meeting someone you love, reading a book to nurture your mind… anything that makes you feel like you’ve taken a step forward on that given day is a good enough start.

One day at a time.

One step at a time.

and, remmeber, you’re allowed to pause for as long as you need to before starting again.

Love,

MD

this is a photo from last year when I stepped out of my apartment for the first time after being bedridden for seven months. Apart from the trips i made to the hospital for tests and appointments, i was completely bedbound due to a massive lower back flare which caused excruciating pain and muscle spasms in my entire lower body. i was also undergoing a treatment for #sibo, following a highly restrictive diet which was helping my physical symptoms and also changing my relationship with food for the first time. With support from my close friends and a couple of family members, i somehow survived those seven months in my own apartment, walking not more than 200 something steps per day. i think i’ve dealt with times worse than that and have come out a little wiser and stronger each time in my entire life. Despite spending countless nights in pain and doubt of whether i’d get out of bed the next day, i’m still here today. Not ‘fixed’ or magically cured. Just doing my best and allowing myself some rest. And so are you. And I promise, if you’ve come this far, you can go even farther.

Anger

Some of us are raised having to justify our anger. We are raised to think that emotion of anger is “bad” and that we are bad people for experiencing that feeling.

Anger is not inherently a negative emotion. It is an emotion that calls for acknowledgement + action. Perhaps what you do with it could be categorised as a negative or positive action.

We need to raise our kids to understand that feeling angry is as natural as feeling happy and emphasize fully experiencing anger and then responding accordingly. Not reacting. Responding.

Really asking, “what is my anger telling me?” instead of distracting the moment you experience the very first sign of anger.
We need to teach our kids to find productive ways of processing anger without feeling afraid of it or feeling guilty for having that emotion.

We need to teach them to sit with it.

Write and share it in a safe space.

Maybe go for a run.

Channel it into a creative project.

Anger and passion are two sides of the same coin. Suppressing one means suppressing the other and consequences of both aren’t healthy.

Growing up in a dysfunctional family, I’ve seen both extremes. One side acted out, the other preferred to suppress and I’ve personally seen how damaging damaging both can be. One can damage your relationship with others, the other can easily damage your relationship with yourself, which then ultimately affects the first.

I’m not advocating reacting in a way that’s hurtful or acting out because that’s giving in to anger and nor am I suggesting holding on to it till it crushes your insides.

We don’t want either.

We want to try to tap into our wisdom and awareness, knowing when to take some time out to ourselves to feel the anger, where to speak about it and most importantly, what to do with it.

Last few years of spending a lot of time alone, I got a chance to work on and let go of the trauma and pain from my past which needed to be looked at. Thankfully, I’ve healed from most of it but I still remember how that emotion has always caused me more pain than it needed to.

I didn’t know what to do with that anger because of what I saw around me as a kid — how was I supposed to experience and overcome anger if I either wasn’t allowed to speak about it OR was surrounded by angry people, yelling and screaming at one another? How was I, as a child, supposed to gauge what is right and what isn’t? So I naturally grew up confused around that emotion — feeling like utter shit about myself for even having that feeling. I held on to it until one day I figured it was eating me up from inside. It took me a while to find productive ways of dealing with my anger and it started with naming it. Being okay with it. Letting myself have that emotion without generating more drama around it.

Sometimes anger just wants to be heard. And I wish someone told me that 20 years ago.

These days I write about it until I can’t write anymore. I cry it out. I call my close friends and request them to be my sounding board. I take a bath. I go for a walk alone. I even speak with my spiritual guidance teacher. If I feel like it, I draw out my feelings and then tear out those papers. Sometimes I keep them to look back. Then I meditate. Take deep breaths throughout the day and sleep over it too. I give myself all the time and space I need to fully experience that emotion before I decide how I want to respond to the situation or the person who triggered the anger in me. At times this looks like having a word with them and at times, it looks like never going back.

Next time you experience anger,give yourself the full permission to feel it without any form of guilt. Remember, it’s both natural and okay to experience “negative” emotions. You’re don’t have to beat yourself up for feeling them. Instead, lean in to those emotions. Listen in.

Be kind with yourself. Find your safe space where you can feel your feelings without being judged and remain there for as long as needed.

<3